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Are we coming to the end?

User
Posted 13 Jan 2016 at 01:27

Hi Rosy
I'm really not sure whether I'd want to know my prognosis or not.
I suppose I'm not really so close to the end though I think.

I can't imagine how it feels for you to have that knowledge and your husband not to and my heart goes out to you. I think though if I were so poorly I would sense I'm close but not like to admit it.

i so hope that the time left is not too painful for you both and that you come through it all ok.

I too will be thinking of you

Paul

Edited by member 13 Jan 2016 at 01:28  | Reason: Not specified

User
Posted 13 Jan 2016 at 22:03
Oh Rosy

What a tough day for you. I think you really did want to know, or you wouldn't have taken that opportunity, though I think you had a good idea of the prognosis. I hope that this news at least makes it more obvious about what to do about work

I know I'll have to face this too, at some point. There's no way to prepare yourself and you can only follow your own path through it. It's very helpful to have generous people like Mo, Zarissa and Carole around to help with the transition, the voice of experience is what we all need at times like this.

Just wanted to send my love.

Allison xx

User
Posted 13 Jan 2016 at 22:51

Thanks for all your replies. It really helps to have support from people who know what it's like. 

The last 24 hours have been awful. He started getting generalised pains yesterday evening which got worse despite co-codamol, ibuprofen and MST. At midnight he finally let me call 111. What a joke! First an advisor who couldn't understand why he had bone pain with prostate cancer despite my explanations, then go through it all again with a nurse, then told a doctor will call within 2 hrs. He tried to get some sleep while I waited for the call which came at 1.30am. Then D said that it was easing off a bit so not to bother with the doctor - he would talk to the hospice team in the morning.

Next thing I know is him waking me at 8am to say he hadn't slept all night because of pain and had got a GP appointment booked. After an hour in the waiting room we saw the doctor. Some blood and protein in his urine so possibly a UTI. Antibiotics and Oromorph prescribed. Chemist didn't have Oromorph so I had to drive round to find one that did. Finally at 12md he took co-codamol, ibuprofen and Oromorph together - an hour later no change! Then I phoned the hospice team - now to use paracetamol, ibuprofen and 'Oromorph as often as you need'. A bit later he was sick - sorry to be revolting but there were kidney beans from the chilli we had 36 hours previously! Once his stomach was empty he had some more Oromorph and an anti sickness tablet and finally the pain began to ease.

He still has some discomfort in his lower abdomen, still taking the Oromorph but less distressed. He looks awful and has eaten 2 bananas and an Ensure drink all day! But finally settled in bed and hopefully sleeping. Another worry was that this evening he said he had some difficulty peeing. He has been since with no problem but it is an obvious worry.

As far as him knowing his prognosis he made 2 brief comments yesterday indicating that he knew he was talking in months now. So he does know but chooses not to talk about it which is fine if that's how he wants it. I see that lots of people use sayings - I think David's would be 'I did it my way'

The hospice team will phone tomorrow so I will be asking for someone to come and visit.

To add to all this we have another major family issue which affects, and is affected by D's health. This issue also kicked off again yesterday causing even more stress! No peace for the wicked!

 Rosy

 One small bonus - I got a letter from our pensions dept saying that if I do go onto half pay due to sickness it will not affect my pension. That's one thing less to worry about.

Edited by member 13 Jan 2016 at 22:56  | Reason: Not specified

User
Posted 13 Jan 2016 at 23:39
Rosy

I hope D knowing his prognosis will ease your situation a little and allow you both to say things you may need too. You are both often in my thoughts.

Thanks Chris

User
Posted 14 Jan 2016 at 03:36

hi rosy
I dont know if you are able to get a number for your cancer hospital I was given a card and told any issues to ring the number on it, have used it once and after I explained how I was went straight to hospital and got checked out, blood, urine and xray all done in 2hours, yep I realise my situation at moment is completly different to yours but its the only thing I can think of to try and help you,my thoughts are with you

regards
nidge

run long and prosper

'pooh how do you spell love'

'piglet you dont spell love -you just feel it'

User
Posted 14 Jan 2016 at 21:15
Hi Rosy

oh my, the horrors of calling 111 came flooding back to me. I guess they have to deal with all sorts of issues and they do eventually get a doctor to call you back when it is necessary. One time when Mick was bad we managed to get him into a special clinic at A&E after calling 111 it meant we had an actual appointment rather than sitting for hours in A&E general.

After that we got an out of hours contact number from our nurse specialist. We never had to use it, but it was nice to know we could.

If D still has identifiable food in his vomit after 36 hours then his stomach is not coping with some things, has he had constipation? I would be worried if he had stomach pain as well as an inability to pee, even if that is intermittent. Certainly worth mentioning to the hospice team.

Of course additional family issues or worries will make every problem so much bigger, sometimes I think the co-related issues feed off each other,making two possibly manageable worries in their own right,one insurmountable one. If you can take them back a stage and try to resolve any bits that you can.

I hope you are able to get lots of things resolved so you can have a restful weekend.

xx

Mo

User
Posted 14 Jan 2016 at 22:20
Hi Rosy,

I don't comment much but I do read all of your posts and my heart goes out to your situation, one day we will be where you are know and maybe in the not to distant future.

I wish that I could offer some magic words to make everything fine but I simply can't what I can do is offer a hand for comfort and a listening ear to help ease your heart ache . We are all here to try and help you through this difficult time.

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 17 Jan 2016 at 17:26

Hi Rosy,
My heart breaks for you, I follow all your posts its so hard to hold back my tears, you are in my thoughts on a daily basics, I don't think anyone can say anything to easy the pain, its the hardest thing to do watch someone you love in so much pain. thinking of you both.
Michelle x

User
Posted 18 Jan 2016 at 12:33
Thinking of you Rosy
User
Posted 19 Jan 2016 at 08:56

Not the best week. He had 3 units of blood on Friday which picked him up slightly but he has ongoing muscle weakness so I now have to help him out of bed and off the sofa. He had a relatively pain free few days but then pain in his ribs and shoulder for the last 24 hours and taking frequent Oramorph. Dozing on and off all day. Eating very little but still trying to drink well.

The hospice nurse visited yesterday and was very good with lots of advice and support on the various issues. MST to be increased and some aids such as a cushion as he has a sore backside. He even consented to having a commode delivered as he can't get upstairs easily for the loo. The nurse tried to start of some frank conversation about the future and David was his usual self giving nothing away! Hopefully it will make him think about anything he wants to do.

BUT over the weekend I did manage to raise one very difficult issue and David agreed to me making some arrangements to see someone he thought he would be unable to see. It was one huge elephant out of the room in Mo's words! But he is increasingly uncommunicative which I am finding hard to cope with.

Well we soldier on...........

Rosy

Edited by member 19 Jan 2016 at 08:57  | Reason: Not specified

User
Posted 19 Jan 2016 at 13:38

I am another one that reads your posts without adding anything.

So just to say how I admire your courage and have every respect for you and your family.

All the best.

User
Posted 19 Jan 2016 at 13:43

I read your posts Rosy and feel so lost for you both , as we all do because we are on the same journey. I wish I could beam you some strength and love X
Chris

User
Posted 19 Jan 2016 at 15:00
Hi Rosy

It is really hard when you see your OH struggling with just day to day things. The mind is willing but the body is weak. I know that Mick used to get really frustrated when he needed help to get around but he did come to terms with the fact it was better to get every little bit of help he could to stay mobile.

We managed to get all sorts of little things to help from our district nurse. Mick had a special air pad for his chair it covered the full length of the chair right down to the recliner. It had a special pump to blow the inner bit up and the whole thing went into a navy fleece like cover. He loved it.

He also had two walking sticks sized for his 6'2" frame, these went everywhere with us even on good days. He used them to keep stable as he walked around our bungalow. We had a special air cushion for his bed it was really easy to set up although the nurse helped me initially. It just had to be pumped up every week or so. This and the seat cushion definitely prevented any sore spots from developing.

I bought a special grab handle which I put up in our walk in shower. It was about a tenner on Amazon and although it was only secured with suction cups, once fixed it was very secure. It just gave him a bit more confidence on his feet.

MST is a great drug for pain relief but Mick just found it made him sleepy and nauseous, he went onto Fentanyl patches instead they were so much easier, I am sure they helped to keep any pain to a minimum but with less side effects.

The lack of communication is really hard for you, so many things you would like to talk about or say, withdrawing is a very normal reaction when you know you are very ill. Its kind of hard to want to talk about anything I guess. In that respect I was incredibly fortunate. Mick chatted and joked with anyone and everyone, it took him a little while to truly open up about some things but he did. in some cases just in time, but at least he did. I suppose all you can do is offer as much encouragment to talk as you can, if and when he wants to talk then be there ready to listen.

I am really pleased you managed to evict a big elephant, it takes time to move one of these but every one you manage to move creates more light into the room.

I think of you every day and wish you all the very best

xx

Mo

User
Posted 19 Jan 2016 at 15:01

(((((hugs))))))))) Oh Rosy xxxxx

We can't control the winds - but we can adjust our sails
User
Posted 19 Jan 2016 at 16:45

Originally Posted by: Online Community Member

I am another one that reads your posts without adding anything.

So just to say how I admire your courage and have every respect for you and your family.

All the best.

 

Me too. All of the above in spades.

All I can offer is to tell him and show him that you love him. That will help to ease the pain.

David (another one)

User
Posted 19 Jan 2016 at 20:18
Rosy,

Elephants the trouble with Elephants is they are Very Big and if you have ever tried to squeeze one through a normal doorway well you might be able to get the head and trunk through but that rear end (no way it just won't fit) trust me I have tried. I have pushed and pulled squished and shoved if it doesn't want to go then it is not going.

My lovely SS (Edamo) has had Elephant training just another one of her talents she can squeeze an Elephant through a mouse hole but this only happens if the Elephant wants to follow the mouse.

Sometimes it is easier to let the Elephant stay were it wants to be , ok so feeding it is a nightmare ( I have 22 kgs of Elephant feed on the lawn) I won't go down the poop route because that is just horrendous .

Explaining an Elephant in the lounge well this is just my tip but if you don't mention it then visitors are just too embarrassed to say Hay there is an elephant on your sofa.

What I am saying is Elephants are ok they are an endangered species , they have a wonderful sense of family and rumour has it there is a place were they go at the end of there days

Sometimes we and try and change our other halves to see things how we do , to cope with our eyes ( I have done this for the 2 years that Trevor has had this disease) at the end of the day it is his disease and this has taken me a long time to understand, he doesn't want to talk or express his feelings and at long lastI am ok with that.

When it is my turn to tread in his shoes then I hope that my loved ones will listen to me.

So Rosy if your Elephant refuses to budge from your sofa don't despair , Elephants are pretty amazing.

Thinking of you

BFN

Julie X

NEVER LAUGH AT A LIVE DRAGON
User
Posted 20 Jan 2016 at 01:33

I'm sitting here chuckling at the image of a mountain of elephant food and poop on the lawn! I'd rather the elephant didn't sit on my new sofas though.

You are so right Julie - I haven't managed to change David much in the 40 years we've been together so I guess I have to accept that he has very rarely discussed his feelings or emotions and that's the way he copes. At least I have lots of friends who will listen and support me and intersperse the conversation with appalling black humour which is how I cope.

Mo - the grab handle is a really good idea and I will order one tonight. I will also ask about the Fentanyl patches as he is suffering from nausea. Hopefully this will settle a bit now though as he has been very constipated but the lovely sachets have had their magic effect finally. He was definitely a bit brighter after that. We are expecting a call from the district nurses re equipment. Luckily my best friend is a community matron and advises me on what we can get to help.

We had a nice evening today (once the sachets had worked) with our son who came for the night. David even managed to raise a laugh that I hadn't made his Prostap appointment late enough in the day for him - it's booked for 5.30pm because he struggles so much to get up!

Rosy 

Always look on the bright side of life....

Edited by member 20 Jan 2016 at 01:42  | Reason: Not specified

User
Posted 26 Jan 2016 at 09:04

A positive update! For the last week since the change in medication he has improved so much. Eating, sleeping and moving around so much better. On Sunday he suddenly suggested going out for lunch - we couldn't get a table till 3.30 but that was fine and we had a nice time. He said it was hard work once we got home but was glad we'd been out.

I've got the bathroom grab handle and non slip bath mat, and we have the chair cushion, mattress and commode being delivered today following a visit from the district nurse. That was an embarrassing moment as my daughter let her in and showed her upstairs as D was still in bed. Unfortunately I was just stepping out of the bathroom with a towel round me - not a pretty sight!

But we have all this equipment and at the moment he doesn't need it. But it's there for when we do.

The only sobering moment was last night when my brother visited for the first time in a while. He was visibly shocked at how D looked and how much weight he's lost. You don't see it so much when you're with someone every day.

Still we will enjoy the good while it's here!

Rosy 

User
Posted 26 Jan 2016 at 09:34

That's great, Rosy,

Just take advantage of the times he is feeling stronger and do things on the spur of the moment. Any little improvement in quality of life is a real bonus. Sending love and hugs,

 

Fiona. x

 

User
Posted 26 Jan 2016 at 16:43
Rosy

what a lovely update.

There are good days and as Fiona says make the most out of every single one.

You now sound as though you are well equipped to deal with up and down days with all the kit and caboodle so thats good too.

Dont you just hate it when you get caught by a stranger as you leave the bathroom with that towel that won't quite stay put! I'm sure bath towels have changed in size or they shrink in the wash. It could not posibly be that I have expanded somewhat!

I hope you get to have lots more lunches out and good days like this one.

xx

Mo

 
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